As someone with Autism I can find it really difficult to both notice and accurately describe pain. I was wondering if anyone else is familiar with that and if they found good ways to describe pain, or ways that Drs seem to understand.

This isn't for any particular pain, it'd be interesting to see any answers as then maybe some of us could learn terms off each other, maybe?

I notice Drs use terms that *must* have originated with patients, such as 'fullness in the ears' which to me is really confusing and doesn't sound like a feeling I could understand, even though they believe I probably *do* have that. But I'll use terms they have never heard before, so they can't categorize it and thus seem to just dismiss it most the time.

Examples for me:

{Diagnosed}

Migraine: Ice cream headache, vice, rubber band around head, knitting needle in the eye and through to brain,

{Undiagnosed}

Body: Feeling like a shark is gripping my waist (Never said this to Drs as it sounds so silly!), burning sensation but no evidence of trauma, icy sensation on back, bleeding sensation but no sign of trauma, pain kinda like hitting your funny bone but down one leg.

Paraesthesia: Like anything I touch is electric, rubbing my fingers feels like grains of sand is between them,

I'm thinking if Drs knew how to categorise our personal descriptors they'd have a better time of finding a diagnosis but they're like 'Well this isn't in our list of descriptives' even if they're looking for 'brain zaps' and you just said 'brain jolts'.

19 Replies

i have had this problem. I have nerve damage down my leg. To describe how it feels is difficult and I feel that one slip up with terminology and I've lost their interest or sympathy.

One thing I have found useful is to say before I start trying to explain "i find describing it really difficult, I'll do my best but please be patient because I get flustered easily" and I smile and try to keep my body language very modest. (It seems they feel threatened very easily)

To describe my pain I use expressions like "it's the same pain you get with toothache, the really acute pain that makes it really hard to speak or breathe but it goes from here to here" then i make eye contact and pause to see if he is still with me. If he seems to be then i move onto the difficult bit which is things like "to a light touch the skin feels numb but to a firmer touch it hurts like hell" again I pause and check to see he is still with me, if I've lost him on that one I back track or say "does that make sense?" I carry on in that fashion until i have explained my symptoms.

My biggest problems are with doctors who have preconceptions about whether your symptoms are real or not. If someone has been asked to see you because the referrer wants to prove there is nothing wrong with you then it's very hard to get them to be sympatheticto you. If they then don't hear what they expect they will be cold and unpleasant to you. The best way to deal with this is to take an advocate with you. A friend or family member who believes and cares about you and will speak up if needed.

Haha '' they feel threatened easily'' I love this. It certainly seems to be one of the biggest barriers to proper care. You have to act like you're not totally sure, and want them to work their magic, but also sure enough that they don't brush you off completely.

I've been told by my family my main problem is I know too much and make it too evident. I come to them as an equal (because that's what we are) and I need to act a little bit, but this is really hard for me. If I have a theory I just want to lay it on the table.

I found saying 'In your professional opinion, what should we do/what might this be' sometimes works as it's an ego boost but if they wind me up before then (aka butting in, not letting me finish, not doing a proper history,) I get too frustrated and forget.

I definitely feel like a lot of it is preconceptions too. Which is something I can't work with at all. I end up coming in the door with the preconception they're all horrible and don't care about your health at all, but I don't refuse to let them prove themselves first.

I do think though, there may be something to your calmer approach, if I'm talking slower, and pausing, they may be less likely to rush over me. Do Drs send referrals with that kind of message? (Aka the whole 'prove there's nothing wrong with them please') DX I'm already untrusting of Drs as it is and am certain they all think I'm a hypochondriac (I've had them tell me my GENETIC condition is psychosomatic, simply because the Dr didn't know of it (it's rare) and had his preconceptions (migraines and sensory difficulties are common with autism and this genetic condition but he didn't think I had autism and he didn't know what the genetic one was...) If that kind of preconception can be passed on to others, even though it's horribly unscientific, it would explain why they laugh off when someone with a heart condition has chest pains too.

I'd like to think all Drs aren't rubbish, and even though they *struggle* with chronic pain, there may be some language barrier we could work on or something to help things forward...

But yeah definitely done with going alone, I'm taking advocates with me to all of them from now on. :/ And thanks!

Here's someone in a novel having a few goes at describing migraine. Tweedie is a character who gets headaches every day. He describes his first headache as feeling as if his head were being laced tightly, like a football.

Variations on a Theme

a) The gong and chainsaw orchestra was tuning up, soon they’d set to work chiselling his eyelids.

b) A giant cockroach was gnawing Tweedie’s left eyeball. His right eyeball was fine but his left eyeball was Prometheus chained to a rock having its liver tugged and chewed by a giant cockroach.

c) The earwig embedded in Tweedie’s right eyebrow was burrowing into his brain. Its friends must have been wearing clogs, they were making such a rumpus.

d) Steel blades slicing Tweedie’s cranium like salami.

e) Today Tweedie had a particularly beery crowd of rowdies partying in his skull.

f) Iron fingers were massaging his temples, seeing how much pressure a pair of hands could apply to the sides of Tweedie’s head and whether it would be possible to crush a person’s skull simply by pressing.

g) He felt the brain smashing machinery starting up. This was a special offer: he knew that within ten minutes, he wouldn’t be able to remain standing. Someone must have told them he’d run out of injections.

h) Harry the hammer was pounding his strut, broadcasting yob music inside the resonant warehouse of Tweedie’s brain.

j) Oh, how could he have forgotten? It was migraine time. Here came the wrecking ball and the iron screw and he’d left his pills in the car.

k) Mr Tweedie? Package of pain for you, special delivery. Shall I just start the manic thumping or would you like to throw up first?

l) As a special treat, Tweedie was having a double migraine today, one pneumatic drill on each side of his head with a nausea descant.

m) This was an old friend. The one sided screw. It dug deep and relentlessly but wouldn’t spread; he could cope with this one.

n) The morning had been all right, just an apprentice head crusher on duty. But the boss had lumbered back after lunch and decided to give Tweedie a treat. “It’s just a knack,” he told the apprentice, “knowing where to press with your thumbs. Always begin by hooking the tips of your little fingers in the eye sockets. That’s it. Now see if you can force your thumbs through the temples so they meet in the middle of Tweedie’s brain.”

o) They were going for broke. Piling it on until something snapped. How many tons of concrete would it take to make his skull explode?

p) Someone with spikes on his heels was tap dancing on top of Tweedie’s head.

q) There was a headache setting up but it was still at the rubber band stage, he could deal with that. The professional lacers were presumably held up in traffic. He’d be alright for another hour or so.

I really like these, especially the one about the apprentice and boss, because the hands movements are obviously in first person perspective as if Tweedie is doing it to himself, and sometimes you feel like you might as well.

Although saying these to a Dr might not get them to understand haha! Might look out for this book though, could you let me know the title of it in case I can't find it?

I totally get what your saying, I have a son with autism who's nearly 21 and he finds it hard to explain to me. I usually get what he means in the end though but have always had the same issues with medical people especially when you go to the emergency at the hospital .

On the other hand with what your explaining about your pain it's like I have and I think you explained it very well. I hVe CRPS and you should tell your Dr that you think you have it and then let them do tests from there.

Good luck with everything, one question for you too and that is do you find that your pain threshold is eather on the extreme and is really good or really bad and not much in between. My son is and I find that hard to know when I should do somthing more than a quick headache pill or go to the hospital quick . Are you like that too

It takes me a long time and a lot of processing before I can articulate something satisfactorily. This can take months to years.

Only recently I realised when people say they feel a 'burn' from exercising, they mean that really mild, chemical reaction feeling that I brush off. When *I* say something burns, I mean it feels like I physically burnt it. And these days, I often burn myself on boiling water and don't feel it, so for something to burn me, it must be pretty severe in my opinion. I mean when I say I feel a burning sensation, I keep checking to see the area isn't red or peeling, I don't understand saying something burns when they clearly don't mean that. it just means when I go to a Dr saying I feel burning down my leg they think 'Oh you walked a bit' instead of 'I can't sleep, I'm in severe pain.' That's messed up.

Is CRPS anything to do with myofascial pain? I don't know what that is, it confuses me but was a random diagnosis within a diagnosis (came along with the migraine one but was never explained).

I also have HMS which causes proneness to injury (like dislocations and joint instability) and chronic pain. But some of this seems more like nervous system issues now.

The drs brush it off as anxiety (which I don't have) and I think my descriptives aren't good enough so they're just finding it humourous instead of serious. (I don't see how waking up some days unable to move your legs is ever funny or worth brushing off, or typical of anxiety!)

Do you know I think you have a very good way of describing your pain and sensations. I think its the doctor that's at fault for not understanding or trying to understand. Is this a doctor who perhaps has preconceived ideas about what an autistic person should be like. For instance believing that you don't feel pain the same as other people !

Have you tried explaining that you think there might be a communication difficulty. Without ,of course saying which way the breakdown occurs.

Or maybe someone to come with you to make sure that the communication is happening the way it needs to.

The issue I'm presented with is that it seems the majority of Drs don't understand me, so either they're all rubbish (my current theory) or there is a severe language barrier that needs to be addressed. Perhaps it's a mix of both. I look at some side effect lists and the names are strange, they're not scientific, they're clearly quotes of clients, so if enough people say it Drs start going 'Oh this might be a *thing*.' But a good dr would go 'Hmm you say this, if I paraphrase it to this... would that sound about right to you?' and see if they can figure out if it's not just a unique way of explaining something they already know of.

It seems like they want all patients to be a hivemind and if we don't all have the same odd sensory descriptive, then we obviously don't have the same thing!

Also this isn't about any single dr. I've been getting failed by the health system since I got unwell 11 years ago as a teen, and only now are they realising I had a series of lifelong conditions, but with growing symptoms and worsening health they're going back to medical neglect and making out it's all mental which is ridiculous. Most of them didn't believe I had autism until my 4 year old referral finally got me an assessment, so all contact I've had with Drs is of them knowing I believe I'm autistic and them rolling their eyes at that too. (I was refused assessments because they thought females can't have autism. Seriously.)

I tried explaining the autism to help but with the above result. Hopefully from now on it'll be taken a *little* more seriously, as I'm diagnosed, but I still want as much on my side as possible.

The funny thing is, I *want* them to explain how this is fine, and normal, and totally temporary. But what they do is say 'go away, it's in your head'. They don't tell me it'll go away, they don't say I have no evidence of harm (because they do no tests), and they ignore and refuse to note down half of my problems, including duration, that it's getting worse etc.. And for long periods of time I try to ignore it and Drs but it just gets worse, and when I see some random Dr they're telling me I shouldn't be avoiding Drs with such symptoms! Such mixed messages!

You ,as an adult, will probably have more difficulty accessing services specific to autism support I guess. I do think having another person to be your support and advocate during medical visits is important. Maybe get in touch with the Autistic Society and ask what help they can give.

I don't think your communication difficulties with the medical profession are confined to you being autistic. Its fairly general and to be fair to the medics we do expect them to not only have ALL medical information but to be understanding and patient as well as good communicators. As with any group of people some are better than others.

So please find a friend or a family member or someone from an Autism group to help you at the doctors .That is if you are comfortable with another person knowing your medical problems.

Oh and by the way. It can be difficult to diagnose autism in young children before 3 so your diagnosis wasn't too late especially since you appear to be high functioning. Oh sorry that sounded bad but I meant intelligent with good language skills.

Yeah I found my problem with them isn't really on my side but their prejudgement.

If they didn't prejudge they'd conduct a proper history, which they fail to do. A proper history could fill in a lot of the gaps so they wouldn't need the whole medical notes on you, but they fail to do that, or pick and choose which things are 'real' before they really know what they are. (I've had people tell me my genetic condition is in my head... because they don't know of it off the top of their head).

However I try to see all communication as a 2-way thing, and try to look at how I can make it easier to meet eye to eye. Even if it means I'm doing all the work.

I notice Drs are very strange and respond to certain keywords a lot, so I figured if I could work out the keywords, perhaps I could get to the point they actually *listen*.

Definitely agree with an advocate though, and I'll see if there's any autism specific ones, but I found general ones are ok as long as they listen, because that's pretty much all that's needed. As like you said, I am intelligent and have good verbal skills, however I'm not necessarily skilled at communication if it's riddled with leading or trick questions. Which Drs seem to enjoy doing. My brother said it's because I seem *too smart* and that bothers them.

(Side note: You're right. But I personally consider it late as I had a LOT of signs younger but they were ignored as bad behaviour, so I just got in trouble, instead of support. THey were easier to make the older I got, and the fact I could mask them were used against me too. Lose/lose. Also considering I fought about 6 years to get the diagnosis once I knew I had it, it was willful ignorance on Drs sides by that point! Strange creatures, Drs are! haha)

Pain is internal, so there is no shared language only shared experience. Pain is complex because a lot of pain has its origin in areas that is not where the pain is.

You need to be honest and say you do not have enough of a vocabulary or enough experience to know how to describe your pain. If you have never burnt yourself on a hot item then you do not know what a burning pain is. If you have never had a paper cut then you would not know what this type of pain is.

There is the added complication that different people feel pain in differing ways so a description for one person would be different for another person. If you relax into pain the pain felt changes considerably. A person who has learnt not to add an emotional feeling to the pain will feel pain very differently from a person who reacts emotionally to pain.

All this means to a very large extent that pain descriptions can be very unreliable.

It helps for me personally, being more accepting to not knowing 'How I feel' (which is one of the most frustrating questions to be asked) but it doesn't so much when you're with a Dr who's asking that.

If you meant to be honest to the Dr, I do, every time. They just look at me blank. I know I'm in pain, and I know I'm spending more time in bed than out. I don't know how 'normal' feels like anymore, and I'm never comfortable.

And the longer it goes on the more upset I am. I know how it's effecting my day to day life.

But when it comes to them saying 'what are your symptoms' they clearly have a check list, and if you pick a specific checklist, you seem like you're trying to get a diagnosis and they resist it.

If you tell them *all* of them, they get bored and shut you up.

I definitely agree with pain differences, between people and in regard to emotional valence. I managed to accept high pain levels more easily by removing emotional valence to them, and imagining the pain is from my TENS machine (which is a strong stimulation at times but I wouldn't call it 'pain' because I had control over it I guess). It was interesting.

I also used a similar thing to not be so scared of the gradual loss of sensation I'm experiencing, I'm just 'experimenting' on how different textures feel and trying to find good descriptives for people to understand.

I just wish Drs knew what you say. They seem to in theory but forget it all in practise, which is the same as being ignorant to me.

You need to remember Drs are educated to communicate with each other. They are taught words which have specific meaning. However, us the public do not have a medical education and only know the words used by our peer groups. The words used by our peer groups can have a very different meaning to the Drs who are not in our peer groups.

When it comes to pain, diagnoses are often wrong. What muscle is doing what. You have no idea until someone checks using their hands what the muscle is doing. As you have already noticed the doctors are asking you for symptoms and not checking the musculature which is responding to the pain and in a number of cases producing the pain.

To help with your pain your need to see people who are Alexander Teacher, Yoga Teachers, McTimony Chiropractors, Massage Therapists. From them them you will learn that there is a whole different world on managing pain that is outside the knowledge and experience of Drs.

I have learnt many years ago that feelings can be very unreliable. Something changes and you have a whole set of new feelings. One of the things I do is to practice mindfulness and meditation. Here you observe yourself and develop awareness of yourself. I have to rely on Buddhist monks who practise 24/7 to get a handle on what I know and don't know in regard to feelings. Drs rely on books and lectures on psychology to get a handle on feelings and as a result can have very little grasp of what awareness of feelings are. They are asking you to describe what they have very little knowledge of themselves.

Hmm this is where my problem might be. I read a lot of medical things, and retain the information at times. I'm sure others do, but apparently I do it more so. THey become part of my vocabulary.

I've had Drs ask me what medical terms mean, not because they don't understand but because they don't believe I do. It means instead of listening to what I say, they're judging how I say it.

I often talk to them as a peer.

I got a letter from a Headache specialist, which started by her apologising for the medical jargon, but when I read it, I wasn't sure which words I wasn't supposed to understand as I knew most of them. IN fact most of them I'd directly said to her, so she was pretty much repeating my OWN words, but expecting me to not really know them as a patient.

I feel like I have to 'learn' patient speak, to be able to not cause a jarring reaction from Drs, and so they might listen to me. If I don't *sound* like a patient, they think I'm just regurgitating some journal I read, and I think the only reason they think I'd do that is if I'm a hypochondriac and am trying to convince THEM that I have that disorder. Which is why I think I get pushed out with a 'it's all in your head' message, when it clearly isn't.

Again I'm going back to my brothers words of 'You know too much, and they don't like that.' :/

As for the techniques, they do come up a lot in my searched. I'm definitely of the opinion Chiropractors are one of the better Drs out there, with a more holistic approach, and this strange ability to *listen*! Sadly being disabled, I'm not able to afford any other things besides regular Chiro and occasional acupuncture. THey make such a difference too...

I was actually at a pain clinic for a year and their focus was on me relaxing and when I told them I go to a Buddhist centre they were totally for it! They were good too.

You know Buddhist Monks?! That's cool. I would love to get more into the Buddhist lifestyle but disability limits me once again from real meet ups =.=

I am on the same page with the notion that Drs only have on side of pain/ill health etc covered. It's extremely limited.

I'm not trying to rely on medical Drs however they have a part to play in the whole road to get better, and if they refuse to even listen, how can we help ourselves? There's options out there that they're refusing us because we didn't seemingly say the magic word.

Without autism, I have difficulty describing pain and, also, I seem to have difficulty with locating the site of my pain as it is often referred. However, there is a programme on radio 4, starting this tonight at 8 p.m., which will be discussing this problem and other pain matters. I do hope this offers help to everyone experiencing pain, whatever the level. LellyDK

Thanks for that, i don't have TV but others might find it useful and perhaps I'll find it online shortly after. Any resources are valuable!

Pain is a very weird thing isn't it? I try to map out mentally how the nerves travel across the body, they must be like the spaghetti junction (I guess only English folk would understand that). I have some knots across my neck and shoulders, and when I massage them I get different pains in my head. I'm not sure if it's correct in thinking this, but I feel like maybe those trigger points are responsible for the migraine of the area that flares up when I touch it. I have chronic, bilateral migraines. Several headaches all on top of each other, non-stop. Which has to have several causes, but thinking how so many knots seem to effect so many random places in my head, is very interesting.

Must be a pain thing, I understand you perfectly and some of your descriptions relate to my pains.

Fullness of ear - have you ever had water in your ear when swimming or bathing, it's that sort of blocked feeling, slight pressure.

Drs should understand burning and icey as these are common nerve damage pains. But to speak their language, this might help -

The shark pain - maybe describe it as tightness or pressure, is it just tight or is it uncomfortable as well? Does it stop you breathing?

Pain is usually described as dull like an ache or something you notice but is not distressing or uncomfortable. Or sharp like your knitting needle pain. These can be further described on the 0 - 10 scale where 10 is the worst pain you have had.

A repeating pain is usually called stabbing and can be dull or sharp.

I sometimes get pins and needles which come in waves and travel over whatever bit of my body. It's more of a sensation than a pain, and quite pleasant to experience.

Your hand/sand could be described as a sensation either pleasant or not.

Another common sensation is feeling spiders walking on your arms and legs, or feathers brushing your limbs.

It's also worth mentioning if you have found ways to lessen the pain, or things that make it worse.

When I had spasm pain in my back, I called it fireworks, there was a single sharp pain which then spread and fizzled out like a firework.

I call a continuous pain like your knitting needle pain screeching violins. like the noise of an orchestra warming up but very loud.

I used to get headaches where my eyes felt like they were being pushed out of my skull.

I'm light sensitive and I say the light hurts my eyes. There is no pain, but what I mean is that the light is too bright for my eyes to work properly, and very occasionally all I see is white. I wear dark glasses alot.

Pain cannot be confined to one or two descriptions, it's too personal for that. Being able to describe your pain in a way that means something to you, helps the acceptance process.

When diagnosing, drs eliminate diseases rather than prove one exists. They have set tests to do for symptom combinations. Even if they know what it is, they still have to do the tests. In cases of complex problrms, the more tests they do, the more they eliminate, until they eventually find the cause.

So if your symptoms don't fit properly into their protocol, then it is difficult for them to know where to start. They should start with your worst symptoms, those being the ones that affect your life the most. And then work through the lesser ones. It is hard for them to get tests done if you don't fit the criteria for that tes, sometimes it's an age thing, or a gender thing, but occadionally an insightful dr will bend the rules.

I have worked in hospitals and health centres and generally the drs have prefered it if patients understand the medical jargon as it's less explaining for them to do. I quite often stop drs explaining things to me with - I understand I used to be a nurse (and under my breath - you would know this if you had bothered to read all my medical notes!).

If only all drs were like House without the drug addiction of course. Very few are enquiring or insighful, or prepared to bend the rules once in a while.Sometimes, that's sll it needs.